By definition, a rare disease affects a small segment of the population, yet combined the 7,000 known rare diseases affect 30 million people — that’s 1 in 10 of us. Many Americans do not realize how common rare diseases are and that our community has tremendous unmet medical needs. On February 29, join together to raise your […]
August 25th, 2003 was the day that temporarily… *forever* changed my life. At least that’s what the doctor in San Francisco General thought—“temporary”.
My MdDS began in December 2012. I didn’t know what it was and kept getting misdiagnosed. My instinct was that MdDS is not only caused by being on a cruise, it could have been brought on by playing for long periods of time on the Nintendo Wii with my kids. I knew that playing some […]
Celeste, a pastor’s wife, shared her history of remissions and relapses with us, and we’d like to share it with you. From 2003 through 2013, this is her case history. The following is something I wrote several years ago concerning my years with MdDS. I am sharing it here because many have asked questions. At the […]
Since Oct 2014, I feel stuck in a space somewhere between the sky and the sea. As is the case for most of us, MdDS invaded my life once my feet touched the ground after a one-week cruise. Since the variation and intensity of my symptoms continue to be as unpredictable as the weather, I […]
Greet the new year with a contribution to help us meet this first challenge of 2015. Now through January 20 27, every donation to the Foundation will be matched, dollar-for-dollar up to $1,000! Donations fund vital research into the cause of and a cure for Mal de Débarquement Syndrome. The more research conducted, the more current medical information […]
With the help of some great volunteers, there is now an MdDS awareness bracelet! It’s been an interesting learning experience, but the design, production and US shipping hurdles have all been figured out, and we are now ready to roll them out to the public!*To receive a Stop the Rock! bracelet, simply make a donation of $20 or […]
Dear Friends and Family, I am living with a rare condition with an interesting name, Mal de Débarquement Syndrome (MdDS). What is that you ask? Mal de Débarquement Syndrome or Disembarkment Syndrome is a neurological disorder that most often develops following an ocean cruise. Less often, a perceived sense of motion follows air, train, or auto […]
